The First 11-Months with my Daughter with Down Syndrome

  • By Springible Contributor
  • Reading Time About 6 minutes
  • PostedJanuary 20, 2019
  • Category

Hi! I'm Amanda Cunningham, and this is my story. There's four of us in my crew: me, Evan, Owen, and Rory. We recently had the life-changing experience of welcoming a new baby into our family.

Rory, our sweet little girl joined the Cunningham crew on May 2nd, 2017. My pregnancy was typical, but I was experiencing severe morning (all day) sickness for the first five months. The doctors assured me that it was normal. After the sickness subsided, the final months flew by. My nerves about having a daughter turned to excitement, the baby shower happened, and the nursery was complete. She came seven days early, just like her brother four years prior.

My labor was fast, so fast that I couldn’t believe the doctor was holding a baby 15 minutes after my water broke. Shortly after her arrival—in dramatic fashion—we were informed that our baby girl, Aurora (Rory), had arrived with undetected Down Syndrome.

Her birth diagnosis has etched deep grooves into our hearts, not just due to her having a disability, but due to the manner in which her disability was presented to us, seconds after she entered the world.

The emotional journey my husband and I have endured the last few months has been a hard one, but from where we stand today, the view is so much more promising than it was in May. We no longer see Down Syndrome when we look at our daughter.

My days are no longer filled with the loss of the daughter I thought we would have. We are a happy family, smitten with a little lady who has a smile that will melt your heart, and the kindest spirit I have ever felt. With each season we are learning to face emotional hurdles as we navigate her perceived limitations, but each day has and will continue to bring a level of joy, humility and hope that we have never experienced.



The dynamics of our family life evolved with the addition of a child just as any families does. My focus shifted upon receiving the news of her diagnosis. I left my job to take care of her full time and create the necessary space needed to continue to provide normalcy and quality attention to our son Owen, in the same manner, we did prior to Rory’s arrival.

This is something I knew I would not be able to do well, had I stayed in my career. Rory was also born with two small holes in her heart and moderate pulmonary hypertension as a result. My husband and I felt it was important to keep her as healthy as possible in her first year of life to ensure we gave her body the best chance to heal itself. We held our breath and hoped like crazy for those first three months. Thankfully, the holes did close and pulmonary hypertension came into normal range with no medical intervention. (We thank God every day for this!)

These days, Rory has weekly early intervention therapy. We are currently working with a physical therapist and an occupational therapist. She is starting speech therapy this spring. There are pockets of time that make us different than other families. There are months when doctor appointments are more prevalent and weeks dominated by therapies. There are times worries + emotions are at heightened levels.

We grieved for the loss of future experience at her birth when families with typical children don’t give these things a second thought on their child’s birthday. But, we are also a lot like other families, enjoying all the simple joys and crazy days that come with raising babies. We are filled with the same hopes and dreams for a happy enjoyable life for our family and children as they grow into adults. We celebrate our children just the same as you.

“Rory has changed my heart from being a woman who feared being different or experiencing hardships into a woman who is filled with more compassion and hope than before.”

Rory has changed my heart from being a woman who feared being different or experiencing hardships into a woman who is filled with more compassion and hope than before. I was fearful of many things in life before having my daughter. In the past, sadness filled my heart for families and children with special needs or illness.

Now, that we are one of those families, and I hold space and love for them. I know that life is good and love is thick while raising our babies, despite what we may face because of that extra chromosome. I now know there is joy and happiness on this road, a joy I was blind to before. Most of society turns away from things or people that don’t resemble the image of perfection or normal that we carry in our mind's eye. I have found that I was missing out on so many wonderful people and experiences because of fear.

To continue to keep a positive perspective and see the reality of our blessings we must take time for our marriage and ourselves. Self-care is hard for any parent of small children. Since having a second baby, I have been putting myself last more often than not. There is so much value in taking time away to recharge.

No one can do anything well when they are tired and run down. Right now I try to focus on the basics: Eat well, have some silent time in my day and engage in adult conversation. When I do get a night away with Evan we aim to keep the conversation away from topics related to Down Syndrome or raising a pre-schooler. This is really hard to do, but it's nice to focus on one another when we have time alone.

I was Amanda before I was a wife, mom, or a special needs parent. It's easy to become consumed with these roles and its important for your mental stability to have space where you can lay those roles down and just be you.

What I know now, is the lies aren’t true, the good life isn’t over. There is no fear in love and despite your shock, you love this child deeply. The fear will subside and love will fill all those dark places. The dreams for your child are still relevant and the image you held in your heart of that perfect family, its right in front of you. The people and resources you need will rise up to meet you at exactly the right time. Your voice now has more power to change the world, as you tell them about the love you’ve found. Your children will still l be your greatest challenge and accomplishment in life as you work to build a lasting legacy. All you need to do now is take it one day at a time and give yourself the grace to feel all the feelings that come. Feeling them helps you get to the other side, where the sky is clear and the air is crisp. The place that once you reach it, you will never look back.

I think Springible is important, because caregiver cane be, at times, can be an isolating place to be. Society has a hard time looking or engaging in things they feel are hard. Having a place to connect with others on a similar journey is necessary. Being told you are seen and heard in this role and that your worries for your children are valid helps soften those feelings of isolation and fear. I’m grateful for the team's mission and dedication to caregivers and their families.

- Amanda Cunningham, Springible Contributor

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